Examples of how DEE-SWAS can disrupt ordinary life

Important information before you read

This section shares a range of experiences children can have with DEE-SWAS. It includes how it can begin, possible longer term outcomes, and how it can affect a child’s learning, behaviour, connections with loved ones, emotions, daily life and sense of self. These changes can severely disrupt school, family life and community participation.

These examples draw on lived experience, including conversations with other parents, my personal notes from advice and insights given to me online that have helped me support and advocate for my child, and published sources. They reflect patterns across countries, although most come from high-income settings. Experiences still vary widely, shaped by socioeconomic circumstances, language, culture and access to specialist services. These examples don’t represent every child’s journey or medical, education or disability advice. They are here to help you recognise and make sense of changes, and to feel less alone. Some parts may feel confronting, especially early on. Read when it feels right. Go gently. Please email me at melanie@voicesofdeeswas.org if you don’t feel your family’s experiences are reflected here and would like them to be.